I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, January 22, 2015


This week has been a tough week for me as far as Alex goes.  Nothing really out of the ordinary happened this week but sometimes I see her in certain situations and the reality of her disabilities become painfully obvious.  I don't live with my head in the sand, I know how severe her disabilities are, but normally I can see past all of that and just focus on just how far she has come without wanting to have a complete meltdown.  Not this week for some reason.    For one thing her drooling is out of control, and honestly, I hate it.  I can't stand that she's always soaking wet, I can't stand that it makes her stink, I can't stand that her bedding is constantly needing changing because it's always soaked, I can't stand that 10 minutes after a shower she has spit in her hair, I can't stand that I have to change her pajamas twice before she falls asleep because they're soaked, I can't stand that we have to do laundry every single night because of all of her bandannas and clothes, and speaking of bandannas, I can't stand that she has to wear those to draw even more attention to herself.  I h.a.t.e. everything about it and I feel like it's getting more and more intense.  We've tried medicines to dry it up and they don't work for her.  She's also seeking a ton of sensory input lately and I'm frustrated because I'm obviously not giving her what she needs.  We met with a new occupational therapist that we're going to start seeing every other week next week and I'm hopeful she's going to be able to help me combat a lot of that.  When Alex is sensory seeking she bites herself - a LOT, she pulls her hair, she rocks and she yells, really, really loud.  What parent wants to see their child doing those things?  Most kids in wheelchairs have vestibular motion issues - vestibular motion is the sensory system that provides motion, a sense of balance and spatial orientation, they don't get vestibular motion sitting in a wheel chair.  Your vestibular system controls so many aspects of your body and it can wreak havoc when it's not functioning properly.  In Alex's case, because she lacks it, car rides and that sense of motion push her over the edge.   She gets so excited when you put her in the car she chokes herself with putting her hands in her mouth, sometimes she will literally have both hands shoved in there, she pulls her hair, she flings drool everywhere and she screams albeit, happily, but screaming nonetheless on the top of her lungs. We took video of her in the car yesterday to show to her speech therapist and she put it in a little bit of perspective - she said Alex going on a car ride is like us going to Bush Garden's and getting on an intense roller coaster.  When you 're on a roller coaster, you yell and scream, you smile, you get amped up - same sensation for Alex.  We need to incorporate more vestibular motion into her sensory "diet" so the car ride isn't the only time she's getting that sensation.  If you rode the same roller coaster over and over and over again, eventually it wouldn't have the same effect on you.  Same concept.  Only when I hear that, I think there are SO many things we already have to incorporate into her day, physical therapy, feeding therapy, speech therapy, cognitive therapy, blah, blah, blah - it's overwhelming sometimes and I just want her to be able to just be a kid and to have a say in what she WANTS to do, what she WANTS to wear, where she WANTS to go. 
Alex should be the poster child for speech therapy - she loves it.  She can be having the most horrible day and she pulls it completely together for speech.  We call her therapist the Alex Whisperer, she is so calm and engaged it's like watching a different child.  She loves her oral motor exercises and she gets so excited when her therapist pulls out her tools.  If her therapist has a tool in her hand but stops to explain something to me Alex will reach for her hand and pull the tool to her mouth.  In speech we are working on her saying the "MMMM" sound and we use these shapes to help with her apraxia.   

The blue square is used to make the mmm sound and there are so many things that go into making a sound.  The position of your mouth has to be just right, you have to pull your voice from your throat, your breathing changes, yadda yadda....it is a true job for Alex to put her lips together AND make the sound at the same time.  But she WANTS to and she tries so hard.  Her therapist said to her yesterday "I know you are trying so hard Alex, you're doing a great job. I can't imagine how hard it must be to know what you want to say and not be able to do it ".  And there it was, that one statement that made the tears well up and that gave me a really good cry later that night.  To see her try so hard and struggle, to want to be able to do it, and to not be able to is crushing.  What is she thinking when we're asking her over and over and over again to do something she's obviously trying to do?  That has got to be so incredibly frustrating.  When we got home from speech yesterday Aaron got her showered and we were both getting her ready for bed.  Aaron said to me "I just need to cut her fingernails" and Alex started sobbing.  It wasn't a hurt cry, it wasn't a frustrated cry, it was a real good cathartic sob.  I honestly feel like she had been trying to hold everything together and between all the work she did at school, speech, her sensory issues that day, she just couldn't take another thing, she was done.  The fingernails were put on hold, she got some apparently much needed loving and it was lights out.  And she s-l-e-p-t.
I really didn't intend for this to be a Debbie Downer post, writing for me is very therapeutic so just putting it all out there can make me feel better.  So if you're still reading after all of my whining, thanks for listening!  I will be fine and she will be fine.  At the end of the day, no matter what, drool and all, we will continue to do everything in our power to give her the best life she can possibly have and it's not always going to be sunshine and roses, life never is!

Tuesday, January 13, 2015


This weekend we took the kids to Masanutten and I can now add skiing to the list of the things that Alex has done that her Mommy never has.  That list seems to be getting longer and longer these days!
Last year my friends Missy and Helen told me about and organization called Therapeutic Adventures that provided ski opportunities for their daughters Chloe and Kara and other kids like ours in wheelchairs.    They went several times last year and couldn't say enough about the program so this year we bundled up and hit the slopes!!

I always want to provide Alex with the opportunities to experience things just like any other kids would, but I will be honest, I never thought skiing would be one of them.

The day was a win/win, Alex and Zach got to experience new adventures and I got to spend the day with some awesome moms and their kids.

Jen, (me), Missy, Helen and Cat

Reed ~ Jen's son

Chloe ~ Missy's daughter

Kara ~ Helen's daughter

Kara is also Little Miss Wheelchair for Virginia so she also sported her crown and tiara on the slopes!

Jim ~ Cat's son

I'm not going to lie, we were super nervous about how this was going to work.  Aaron was not thrilled with the idea, at all!   It's one thing to do something with your kids, but when you have to totally rely on someone else, someone that you don't even know, to take your child up a mountain and depend on them to bring them back  down in one piece is pretty nerve wracking. 

We got her all bundled up and as warm as possible... 

....and Daddy carried her to her ski chair....


...and triple checked that all buckles and straps were securely in place!

Then it was time to meet Bethany, her ski buddy for the day.

After a final strap and buckle check...

...Daddy helped push her off to head to the ski lift.

And then all we could do was say a prayer, hold our breath, and just watch!

...and here she comes!!
A big thanks to Helen for this picture - I missed her coming down several times!  

After her first run I could not tell if she liked it at all.  Bethany said she was very nervous on the ski lift when they got to the top.  I couldn't decide if I wanted to feel bad for her or be so happy that cognitively she got that she was high up and it's a scary thing!

It's really neat to watch how they stop the ski lift for the kids and how they give them as much time as they need - it takes a while for them to come back down the mountain from the time they go up and I never did gauge the time right.  We had Tammy with us and she was a pro at figuring it out by the end of the day.  

She did two runs and then we brought her back into the ski lodge to eat and warm up.  After she was warm and had a full belly she answered our questions and said she had fun - and she was really loud and animated after that too.


After her break it was time to bundle back up and head out for a few more runs. (And I think Aaron was finally a little more at ease - he's actually smiling there in the background!) :) 

While Alex was doing her thing Zach got all suited up decided he wanted to try snowboarding.  
Aaron went and got his snowboard and ski lift pass and then helped him into the snow board.

Standing, not too bad...


Daddy helped him back up...


After a few more feeble attempts Ms. Sarah Ann came by - Sarah Ann works for Hope Therapy where Alex does her physical therapy and was one of the volunteers helping with Therapeutic Adventures. Back in the day Sarah Ann did quite a bit of snow boarding and she gave Zach an impromptu lesson on what to do and what not to do. 



Then, viola, he was off!
And oh so proud of himself!
And so were Mommy and Daddy!

After a few tries on a little slope he decided he was ready to hit the ski lift and head to the top of the mountain!

By the end of the day you would never have known it was his first time snow boarding - he loves it and can't wait to go back in a few weeks to do it all over again!

When we travel it's sometimes hard to accommodate Alex because she can't sleep in a regular bed - she has no sense of boundaries and will just roll right off - if we can push a bed against the wall we can use a bed rail but if not we have to use an air mattress.  This trip we had to use the air mattress and she did not sleep well Friday night at all - well, none of us did, actually!  She was so tired Saturday evening I decided to put her in our bed and it seemed to do the trick - she slept for a solid 6 1/2 hours without moving a muscle.  Unfortunately for me, she fell asleep at 6PM so that meant we were awake off and on from midnight on. At one point Zach and I had gone in to check on her to make sure she was still safe and secure and she was sleeping with a huge smile on her face.  Zach asked me if I thought she was dreaming about her day skiing, of course I have no idea what she was dreaming about but I'd like to think she was and that we made her happy.

Sunday before we headed home the boys tried out the zip line.

I was originally going to try it with Zach, but then I chickened out and decided it would be better if Aaron went!

I was happy to have kept both feet on the ground and watch.  Zach loved it and although there were a million more things he wanted to do before we headed home, he was pretty happy that he got to experience two new activities.

The resort has so many things to do and I was bummed that we had to leave on Sunday since we had the unit for the whole week.  We had planned to take Zach out and do a few things Saturday night, but by the time Zach was done snow boarding and we cooked dinner, we were all tired and just vegged out for the rest of the night.  We're definitely going to go back in a few weeks and take advantage of what the resort has to offer. 

Regardless, we had a fun time, it was great to watch the kids experience new things and see them happy. 
In the end, we made memories, and that's all that matters!

A big thank you to Mark and the volunteers with Therapeutic Adventures.  I am always amazed at programs like these and the people that volunteer their time so freely and with such passion for the sake of others.  It's an incredible blessing and we are so grateful to be on the receiving end so that we can give Alex the best life she can have.